so, I may have discovered breathing, but it is hard to change when one continues to breathe holding the same old posture.
Advanced Hedgehog Pose.
Sogyal Rinpoche has interesting things to say about breathing, posture and meditation in ‘The Tibetan Book of Living and Dying’.
Page 66 in relation to meditation he says ‘ In the Dzogchen teachings it is said that your view and your posture should be like a mountain.’
No mention of small spiky mammle’s.
One of my older and much wiser friends told me that her yoga teacher had started concentrating heavily on breathing following a back injury. She cheerfully told me that breathe work is preparation for dying!
I’m not dead yet and breathing is actually pretty important in order to stay that way!
Can one sustain advanced hedgehog pose indefinatly?
The problem with this pose is like all asana’s it takes a great deal of time and practice to perfect.
Years of training lead to the behavioural and postural patterns of the advanced hedgehog. The curl reflex required for advanced hedgehog is instinctive and ultimately like all fight/ flight instincts it is there for a reason – initially it is useful in some situations.
Additionally, all my muscles contract terribly during seizures so if my back looks a bit curvy there are good nurological reasons!
But, for how long would it be possible to retreat into advanced hedgehog before being hit by the proverbial ‘car’?
As it turns out it wasn’t necessary to wait long to find out.
Curling up into a ball hoping that life won’t happen if you don’t grab it by the balls is unfortunately not a good coping strategy.
And so, major life events continue to happen regardless of whether you are ready for them or not.
There are a number of events that are difficult to manage when you don’t suffer from a long-term health condition. It was really terribly bad luck to have to face more than one of them all at once.
When I was a child I did not sit down and plan for bad things to happen.At school they like to encourage you to aspire to a career or vocation. It is such a pity they don’t actually prepare you for anything more than examinations in mathematics. As far as games go the gods had defiantly sent me down a snake rather than up a ladder.
Shit happens that’s life.
So, what kind of help is there out there to recovering advanced hedgehog?
I had to relocate. Health wise a higher level of care was needed so I returned to family. In terms of recovery this has plus and minus points. Returning to the source of life long habitual patterns may not always be a healthy thing. From the point of view of care, a hedgehog can be ‘smothered by love’.
In order to continue exercising, I went to look for another ashtanga class. But, before I could find one, I walked into another kind of moving mediation class.
The teacher was pink and purple and red and yellow all over. He is the most brightly coloured individual I have ever met. Not only a study in all colours of clothing ( like a Judy Garland song), the future of hedgehog rehab had never looked so ‘bright’.
I had walked into a Tai Chi class.
1)http://www.rigpa.org/about-sogyal-rinpoche.html information about sogyal rinpoche
So, to some people the fact that your head is attached to your body by billions of neurons, will not come as big news (for all of you budding brain surgeons out there).
For me the process of finding out was slow and painful.
Early in my 20’s seizure control and frequency took a big nosedive. I even developed a new type of seizure to complement the bigger ones ( a sort of 2 for the price of one offer). This was particularly frustrating because it happened after they tried new medication on me (Ruth the human guinea pig).
Like a lot of other guinea pigs (sorry,epileptics) who get to be cannon fodder for the pharmaceutical industry my consultant recommended the ‘latest’ drug to exchange for the old one.
The problem with the old one was that it wasn’t good for making babies, now it is not recommended as the drug of choice for women of child-bearing age.
The problem with the new one was that they didn’t have much history to go on what it could do, but they wanted to try it on as many people as possible to find out. That and the fact that as far as drug interaction is concerned it didn’t sit well in the body with the older drug. Unfortunately you can’t just stop one drug and take another. It is more of a weaning process.
After some years (yes YEARS) of taking the newer drug with the old one, and a deterioration in health, they tried another drug which also didn’t work. And then another drug, and another…
I got to experience some really special side effects. Who needs narcotics when you get double vision and tone-deaf from your anticonvulsants?
I had put on a lot of weight from taking the first drug. It wasn’t helped by the contraceptive pill.
Eventually, I realised that although I was exhausted I needed to try to lose weight.
I bought a fat burning diet book and looked for exercise classes.
The class I tried first was yoga.
I went to a Hatha yoga class.
It was a very big room, in a posh part of Cheltenham. The teacher was friendly and there were candles in the hall on the wooden floor. I wasn’t sure what to expect, but I wasn’t prepared for what happened.
The teacher took us through a couple of poses, and then for an extended amount of time we lay in ‘yoga nidra’ or ‘corpse pose’.
For people who have never taken the time to exercise or listen to their bodies I think ‘nidra pose’ (flat on the floor on your back) should come with a health warning.
In my case, all the things that were worrying me just flooded into my mind on the kind of volume you get at Wembley stadium or rock concerts. Anything that was happening in my life just marching through my head, despite the teacher doing guided meditation. I couldn’t concentrate on her there was a Glastonbury festival happening in my mind!
Frankly it was my worst nightmare.
And about as pleasant as having someone use my head as a football.
The problem with trying to listen to your body is that you may not want to hear what it has to say.
And so, I did not return to the Hatha yoga class.
Instead, I decided to try Ashtanga Vinyasa yoga.
The class was held in the small leisure centre on the doorstep of my work.
I didn’t know anything about it, but I was hoping that it would involve more moving around.
Well, it most certainly did involve moving around.
PHEW! I didn’t realise that Ashtanga was so athletic! There I was hadn’t done exercise for years and they seemed to be expecting us to jump around and stand on our heads! Upside down! I was having trouble with upright, leave alone inverted! It was a bit of a shock to the system, and at the time my head hurt so much that I just sat on the floor curled up in a ball with my hands over my head flatly refusing to even attempt to put any weight on it (advanced hedgehog pose). I suspect that this was a lot like how I was coping with life at the time. I would like to point out that this was a very well-instructed and safe beginners class, so I was not in any danger of hurting myself. It is interesting to note how I felt about my body as I was comparing myself to those around me quite a lot.
I must have got something from this experience (apart from sore legs), because I did persevere with the class as often as possible (about once every 2 weeks) during the course of a year. I either came out of it looking like I’d had a shower (the sweat I mean) or feeling like I’d been hit by a bus. Energetically Ashtanga was a bit ‘all or nothing’. After about 6 weeks, I noticed that although seizure wise my health was still pretty dire, I had a little bit more movement and flexibility. Years of seizures had not been good for flexibility.
I think that what led me to continue with it was that I found there wasn’t time to think when I was busy stretching into uncharted territories or wondering how my teacher managed to stay upside down without falling. There was a mini yoga nidra at the end, but there was more danger of me falling asleep than thinking after that kind of physical torture!
One day I had a seizure in front of my yoga teacher. It was actually a co-incidence that she was there at all. She was in the building to see someone where I worked. I was not really able to stand up and I was really out of it as far as being able to talk or communicate. I felt like the world was going away from me and my side was twitching as usual. It was a partial seizure. I could see the world in a very high contrast kind of stong light and dark way. A couple of people had come to my aid already but my yoga teacher assisted them to put me in recovery position.
It sounds very strange, and a bit clichéd but what she said when she was holding me safe has probably changed the course of the rest of my life.
She said’ Breathe Ruth, breathe’.
I can’t say I stopped fitting. I don’t think my breathing changed either, but something happened deep down inside, much later on, it was as if a part of me heard her and didn’t forget.
I had been having seizures for years, but had never noticed my breathing before. I had never been aware that I wasn’t breathing properly during partial seizures. No-one had ever told me to breathe before.
Years and years later, one of my best friends told my other friend she had realised I was having a seizure because my breathing changed (sometimes they don’t notice if I’ve gone floating off into space – it’s harder to spot than falling over) she was sitting at my side so she couldn’t see me from the front.
Breathing is really important! So important that if you don’t do it your heart stops! No heartbeat! No brain squiggle! No Ruth! This really shouldn’t come as a revelation!
It sounds really obvious but I had never been aware of my breathing before.
1)http://www.epilepsy.org.uk/info/seizures/focal-partial for more information on partial seizures.
So what happened next?
Higher Education, boyfriends, contraception, work, happiness, sadness, tears, joy, anger, grief, fear, laughter.
Life happened next. In a nutshell when I finally meet my maker or return for another round on the cosmic wheel (depending on your perspective) my tombstone will read ‘It wasn’t dull’.
A lot has happened in the last 33 years. A good half of which was spent being quite unwell, a great half of being unwell was spent being very unwell.
But the purpose of this blog is not for me to write an autobiography on being ill. This would take a considerable amount of time, and detract from talking about something much more interesting – how to get better.
When I say get better I do not mean cured, or in control fo my health, body, mind etc.
I think the best way to sum it up is: I became more aware of what leads to poor health and in my case in particular seizures.
As a result I am able to live with my health condition as a whole person.
In order to explain how this could happen I am going to start with someone else’s story.
‘Teach us to sit still’ A Sceptic’s Search for health and healing by Tim Parks
This brilliant and insightful book is not for the faint hearted. It is not a comfortable read. I have spent the last 2 days reading it and anyone who has read it will be aware that the first part is far from relaxing. I challenge anyone to read it and still feel comfortable sitting down. I became extremely aware of discomfort in my ‘derriere’ as I leaf through from cover to cover.
This is a tale of pelvic pain. Unexplained pelvic pain. Every test known to mankind couldn’t provide a reason for this man’s pain in the pelvis.
This autobiographical account follows the author on his journey of self exploration as he undertakes the mission to address his relationship between pelvic pain and his mind and body.
How does this relate to epilepsy? (because obviously the first place you look for epilepsy is your pelvis right?)
In my personal experience it relates to epilepsy for the following reasons;
When I was first diagnosed with epilepsy, everyone spent a great deal of time concentrating on finding something wrong with my head.
They CAT scanned me, X -rayed me, EEG’d me, ECG’d me (ok so that my heart), MRI’d me. They took blood, and made every attempt physically possible to find something wrong with my head.
Despite experiencing generalised seizures throughout childhood only one EEG trace ever showed anything that could be construed as ‘abnormal’.
This was despite spending much of my teens falling to the floor unconscious and head banging.
One MRI scan in my 20’s showed a tiny scar in my left hemisphere, which according to the consultant was typical of 1 in 10 people my age (basically, nothing to write home about). It didn’t explain why I was having seizures.
Other EEG’s in my 20’s drew a blank. No squiggles. I felt like the consultant was looking for a pulse in my brain. No heartbeat, no heart? No squiggle, no brain! simple!!! Or in my case no sighting of the ghostly phantom epilepsy.
The science of EEG – like looking for the Higgs Bosum?
Epilepsy EEG diagnosis is a bit like the science behind the Hadron Collider at CERN. It is a bit hit and miss, with a high margin for error and still very much at the experimental stages (but they don’t tell you that when your wired up to the machine…)
And so, throughout the course of my childhood and into my 20’s I grew up with the sense that epilepsy was specifically a brain problem. This meant that there was something wrong with my head.
I don’t think I was the only one to think about epilepsy this way. In the west we generally focus in on the area without taking into consideration the ‘whole’.
It was for me as if my health problems began and ended at the base of my skull. As far as body image went, I had been guillotined (let them eat cake!).
To make matters worse at one point, during a worsening in seizure activity, one epilepsy nurse suggested I was suffering from panic attacks.
At the time the consultant neurologist’s answer to poor seizure control was ‘if it isn’t working keep increasing the dosage until it does’.
This strategy had one very direct effect. I couldn’t feel my body. I couldn’t think straight actually, but lets concentrate on my body for now.
Looking back I am pretty certain that by 26 I hadn’t been able to feel my body since I started medication aged 13 1/2, if ever at all.
13 years is a long time to be decapitated.
There are a few billion neurons in the human body. Let me tell you right now, the miles of wiring that attach your brain to your body to not stop at the top of your spinal cord.
Did the headless horseman ever find his head? Or did his head ever find his body?
Eventually, in the spring of 2010 the consultant finally took an EEG with squiggles on it.
The squiggles he would expect to see in an epileptic. The squiggle location pointed to epilepsy of a genetic origin.
I can’t tell you how pleased I was. It was like finding the holy grail. It was such a relief to have an explanation of sorts that didn’t involve scars in my head or a tuma.
By this time I had been exploring the mind-body connection for some time.
I was prescribed Epilim Sodium Valporate. I can’t remember what dose they gave me to start. It was increased to 1000 – 2000 mg during school years.
It was the start of my GCSE’s but it was the end of my school education as far as memory and concentration were concerned.
School was a bit of a blur after that. I couldn’t understand why I wasn’t able to learn and do the work for my GCSE’s. I went down in my language classes, maths, science and history lessons my marks never recovered at school.
Exercise was also none existent by the time I left school. It had become increasingly difficult to do exercise because I would feel really exhausted afterwards, and normally I was exhausted before I started!
I don’t think that there was the understanding at the time of the effects of anticonvulsant medication on memory and concentration and its potential to disrupt education. It is a bit sad but I just thought I was stupid and was different to my friends who were hitting their academic milestones. It felt a lot like I was thinking my way through treacle.
During school I can’t remember how many more seizures I had, but I think it was actually no more than 4 or 5 over the course of my teens. It appeared from observations made at the time that they were linked to my menstrual cycle, but sleep deprivation played a big part. I think the reason the seizure frequency was so low was because I was on enough medication to knock out an elephant!
Honestly, I was so dizzy! Apparently I used to sing to myself in class. I wouldn’t even notice I was doing it! My friends found that my little idiosyncracies were what made me, so that and the excessive sleep with desire to spend time in a library were part of my personal charm! 🙂 In my school year book which was made when we left school, one of the comments a friend made was drugs? Everybody knew I was a bit spaced out.
I remember my art teacher told my mum that it was like I had a personality transformation. I used to be a happy, bubbly person who was able to learn.
All I wanted to do at school was sleep. I really did sleep a lot. I found it hard to get up in the morning and would nap through the afternoons in 6th form. My Dad used to go nuts because I would miss the bus in the morning and he would have to take me to school.
When I started my ‘A level’s’ the pediatrician had identified that the Epilim Sodium Valporate was having a poor effect (the excessive sleepiness may have been classed as needs to spend more time awake). He prescribed Epilim Chrono. The crucial difference between Sodium Valporate and Chrono was that Chrono was designed to be slowly released into my system. This is vital because if you take 200 mg of a drug in the morning; having the whole 200 mg downloaded into your bloodstream before lunch will not mean that you are awake and spritely. Chrono seemed to gradually improve my levels of consciousness and so it was the drug I was left on into my early twenties.
When I left school I had an A in Art ‘A level’, but low grades in german, art history and general studies. It was all a bit frustrating, but I was happy with my art results and went on to study art at foundation.
There was one other person I went to school with who had epilepsy. My pediatrician was also his pediatrician so he asked us both if we would like to meet. This was a good idea because it really did help to meet someone with similar problems. We compared notes about seizure types and medication side effects. This made a big difference to me and I think it made a difference to him as well. He had a bad time because his seizures were partial complex seizures which meant that he would still be moving around while he was unconscious (as opposed to head banging and going blue).
This had led to big problems in his first school, so he had to change schools to my school. His teachers thought he was mucking around when he used to walk around the class and lie on the floor. They thought that epilepsy was all about falling to the floor and frothing at the mouth. This is a big problem for people with partial complex epilepsy or any type of epilepsy. I didn’t even know what epilepsy was before I had it, imagine finding out that there is more than one type of epilepsy!
I was 12 1/2 and had just returned home from my first school trip to Austria. I was tidying my attic bedroom when I woke up on the floor. Strangely, the first thought to come to mind was not “why am I on the floor with a cracking headache in the middle of a heap of papers”; instead, I honed in the desperate need to pee and so I pulled myself up to the top of the attic stairs.
At this point I must have lost consciousness because I heard the crash of my body hitting the stairs and taking my dad’s library of bookshelves with it. I certainly felt the effects of hitting the floor at the bottom, but what probably saved me from breaking anything was that my body was limp from being unconscious.
My sister Ali (one of 3 of my sisters) heard the crashing sound from the living room and came running up the stairs. I opened my eyes to see her standing over me flinging books across the room to try to un-bury me. She was really scared. She ran downstairs crying out “Mummy, mummy Ruthie’s fallen downstairs!”
I tried to explain what had happened, but I couldn’t talk properly and I couldn’t remember what had happened prior to waking up ont he bedroom floor. They took me to hospital in the Landrover. It took two years for me to remember what had happened. I was watching the black and white television in my bedroom. When I stood up to turn it off I had a seizure. I obviously didn’t know what was going on during the seizure, but I remember the feeling that I experienced again many times afterwards when I was heading for the floor at rapid speed.
The pediatrician was suspicious, but I had never fainted before and so on that occasion he decided that it was most likely a faint.
Two weeks later I woke up ont he kitchen floor with chairs strewn all around me. I had done a good job of redecorating mum’s kitchen. I had a cracking headache (slate floor). I somehow made it upstairs to where mum was hoovering. I told her I felt ill so she put me to bed. She didn’t realise what I meant untill she went downstairs to see the remains of her kitchen, vase of flowers all over the table, chairs all over the floor. Another trip to hospital. No witnesses no diagnosis.
It was during a school history class age 13 that I was finally diagnosed. It was time to leave. We had been watching ‘Escape from Sobibore’. I got up to go and was puzzled to see the floor travelling towards me at speed. I came around looking into the eyes of the school nurse and my history teacher. My two friends were anxiously peering over the side, they were allowed to go when I came around. Up till then no-one had seen me have a seizure. My teacher’s brother had epilepsy so he had known what to do so he protected my head from the floor. I had still hit my head quite badly.
Some time afterwards one of my classmates said that she didn’t know i was epileptic (It had come as news to me two) apparently she thought I was doing an impression of one of the Sobibore inmates. She is now an actress. I understand that no-one ever watched the film again at school.
Although It was a relief to have a diagnosis of some kind it did come at a price.
Back in the Nineties, the answer to juvenile myconic epilepsy was medication. That is when my problems really began.